An "exceptional" son and his father are inspiration for each other in many ways. The family's journey is documented here daily (well almost). The father's artworks along with father & son collaborations are for sale and can be viewed here as well.

Tuesday, June 19, 2007

There Are Days

There are days like this one. Getting out of bed is difficult. You know what’s ahead. Changing a wet diaper of a 7-year-old. Mixing the medications for the morning nebulizer treatment while preparing the correct amount of Pediasure with water for the daily nutrition. Was today the day he gets the steroid? I wonder if he had a BM yesterday? Better add the Miralax.

I check the blog and read the news before I push his “life cart” into what used to be our living room and now called the “therapy room.” I then lift the sleepy 40-pound body into my arms. Gotta be careful. The last time Joan rushed this maneuver she really messed up her back.

The two syringes of meds are pushed into the feeding tube. Since the nebulizer is almost done I hook up the inhaler for the two puffs of Flovent. I attach the feeding pump and check the dosage: 120 milliliters of food per hour. If all goes well he’ll finish around 6 or 7:00pm.

As I get ready to take my shower I hear him coughing up a bunch of phlegm. I go back downstairs and turn on the suction machine. Man, he is really junky today.

The morning chores go by quickly. I watch Jessie through my office window. She’s playing with a friend on the neighbor’s swing set. Later we’ll pack her up so she can visit the friend’s pool and be ready to spend the night with her: typical summertime activities for a child. I go back to check on Ben. His arms are reaching toward the dining room table.

“I know, Ben. I know you want to paint. I can’t set you up right now and sit with you so you can paint. I have get ready for the show this weekend.” A touch of sadness and guilt creeps into my conscience. He can’t get up on his own. In fact he can barely sit up on his own so I can’t even leave him alone in his wheelchair for him to play with his toys. So he will lie there on the floor for a couple of hours until I can make time to do some leg exercises.

Before I head into the studio I give him his afternoon nebulizer treatment and then surround him with a few of his favorite things. I pick up the monitor out of the bedroom so I can listen to him fuss at me for an hour or so because he is alone.

All is quiet now. I can hear the spinning thing on the feeding pump that administers a little bit of formula every few seconds. I walk downstairs and find him asleep. No doubt he was bored. I place my hand on his forehead. Good. No fever. I start to leave the room and then it happens.

A creak in the floor, a car horn outside, a bird singing in the tree outside. Whatever startled him awake has made it begin. He begins to shake uncontrollably. Eyes filled with fear roll back toward the top of his head. He’s struggling to breathe. Nothing I can do will make it stop. He doesn’t even know I’m in the room with him.

I pick him up though and hold him close to me. I whisper encouraging words. “Ben, you’re okay. Calm down now. Just relax.” I say these words to comfort me because he can't hear them. I watch the clock. 30 seconds seems like an hour but his body is beginning to relax. I smile at him but he shows no emotion. For the next 10 minutes I can feel tremors pulse throughout his limbs. Finally he looks at me and smiles. It is over.

I sit him up in my lap and we talk. He instinctively grabs my free hand with both of his and hangs on tightly. This is his effort to make me stay. I unhook the pump and carry him up the stairs and into the studio. I’m now behind schedule but I need for him to be near me. He will be a distraction but a kind and smiling one. The feeding will have to wait until later.

I place him in the beanbag chair so he can watch me. Once more the arms reach out toward my easel. “Yes, Ben. I know you want to paint but Daddy has to get ready for a show this weekend. We will paint again soon.”

And there it is again, right there at the edge of my conscience. That familiar emotion that never goes away. It is an unwelcome guest that took residence the day we watched the first troubling ultrasound. The Guest always demands things that can't be done. It asks questions that can't be answered. The Guest taunts me and reminds me I can never do enough.

9 comments:

I appreciate your sentiment, Kyla. I know for a fact that The Guest sits on yours and Josh's shoulders too. He whispers cruel things that really aren't fair. Call it Satan, call it your sub conscience, it's always there.

In the case an exceptional child you second guess everything you do or don't for your child. I would love to dedicate every moment of my day to Ben but thats not reality, particularly when you're two income family which most of are.

BTW, we had one of our wonderful nurses today so Ben had some great interaction today. This post has been a long time in the making. Seven years in fact.

I also wrote it for my wife. She gave her blessing of this post because it is universal.

Bennie--you're in my mind, taking my thoughts. I often realize that Simon has laid on the floor most of the day entertaining himself (if you can call it that) and I haven't or couldn't make time to work with him. At least at bottle time, I get to snuggle him a lot. I too am grateful for Simon's health, although he does have seizures, but not on Ben's level.

I feel rotten for him. Guilty about myself and often dreading the years ahead.

Simply beautiful! To say I can relate is an understatement. Much of what you describe is my everyday too. From the mixing of the drugs to the guilt for not doing enough. It never, ever gets easy or goes away.

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The Artists

Ben is a wonderfully happy 11-year-old boy. He has a rare genetic disorder scientifically known as Tetrasomy 12p. The related syndrome is called Pallister-Killian Syndrome (PKS). As for me (Bennie, the dad), I'm a 1986 graduate of Furman University with a BA in fine Art. Married to my wife Joan for 17 years, we have two children; a daughter named Jessie and our son Ben. It is through Ben's inspiration and our current living situation that I was able to become a full time painter over six years ago. From March through November I do art shows and festivals throughout the Southeast. We occasionally offer our collaborative paintings for sale - prints are always available. It is also important for our family to tell about our experiences in raising an exceptional child. My love for Ben goes hand in hand with my creative process. Without one I cannot have the other.
It is our desire that this blog not only provide a part of our family income but more importantly we give you inspiration, hope, joy, and insight for your own journey in life.
God bless!